Pages

24.10.15

Way overdue update...

So where have I been? Well I've been off you know living and all that jazz but why haven't I been here on this blog for near on 3 weeks? Well if you haven't noticed there's been a bit of a change. I had a bit of a re-design. I wanted a new feel to the blog because I figured I'd had my transplant so I wanted the blog to have new look to kind of go with that change in my life. It was always the plan really. I don't know what you guys think but I was going for a clean more grown-up look and I really like it so I hope you do too. I didn't want it to be too busy because I know that can be distracting when you're reading a blog and dark colours always seem to dark and dim a blog down as well so I stuck with pastel colours that I liked and I'm really pleased with the result.

__________________________________________________________________

So it was that time again guys I had another clinic. Another 3am start, I don't know how I do them guys honestly 3am is a killer, it wasn't a bad drive though, I got transport there and the guys who drives me sometimes brought his wife along and it seems she had done a bit of research on me before coming and she was chatting away and asking a lot of questions so the journey actually went quite quickly even though it was over 3 hours :)

Clinic was it's usual self pretty boring really, you start to recognise everyone there which is actually really reassuring, I suppose I don't feel like a total newbie anymore because before I kind of did I guess even though it was a pretty smooth transition as far as they go. Everything is pretty good generally, my lung function is stable at 78% I feel like I could have done better but I was really tired so probably didn't put as much effort as I normally do into it. I think I was making up for it in the days that followed because I was blowing some of the highest lung functions I've done since transplant on my home machine so I reckon it's probably a bit higher than the 78% ;-).

So I've been having some issues with dizziness and lightheadedness recently and we did the quick blood pressure test and it seems that my blood pressure keeps going down a bit it's not anything major but at my next clinic I'll have to have a echo just to be sure nothing dodgy is going on with my heart. Then there is my acid reflux issue. I kind of always knew I was going to have a issue with acid reflux post transplant because I had a issue with it pre transplant. I don't know if any of you remember me telling you but one of my drugs pre transplant quite badly affected my oesophagus because essentially one of the jobs of the drug was the relax muscles and one of the side affects of that was the relaxation of my oesophagus this just means that at the base of my oesophagus where it opens and closes to let food into the stomach it's not as officiant as it should be so can let acid from my stomach back out and can therefore go back up my throat, this is potentially bad especially for my new lungs as it could damage them if acid is getting into them. Lately I've been getting quite bad hiccups and I constantly feel like there is acid in my throat especially when lying down so I'm being referred for some PH studies to see how bad the acid is and whether it may affect my lungs in which case I may have to have a Fundoplication. I'm not going to think too far ahead or be worried about it right now because everything seems nice and stable and if it happens it happens. Also I know if I start thinking about it, I'll worry so really no need for me to be worrying about something that may never happen is there? :-) In the mean time I have been put on another stomach medication to, so hopefully that will help with the acid reflux and who knows may even get rid of it *Fingers crossed.*

They changed some of my anti rejection meds which actually involved taking me off of one completely which is slightly worrying because I was on 1 gram of it twice a day and now I'm not on it at all which is slightly unnerving and I know Papworth wouldn't have done it if they weren't sure I needed to come off of it and they did say that I was over immuno-suppressed but I suppose the anti rejection meds are like a security blanket for me and I kind of wish they had maybe reduced it by half and then checked a week later and then if I was still over immuno-suppressed then taken me off the remaining 500mg. It's not a massive deal as I'm still on another imunnosuppresent so that's keeping me slightly more relaxed about the situation and I've got a blood test this week to check on it, it's just a bit worrying as it's the first time I've been taken off of them so just a new thing to get used to I guess.

I got to see the newbie doctor at Papworth and I'm not so sure what I think of him yet, I can't decide. He's very quiet and I find I ramble at him because he's so quiet and I can't be doing with the awkward silence also it freaks me out when someone doesn't have a proper handshake. I know this sounds ridiculous but the mans handshake is very odd! When I shake someones hand I expect you know, a hearty grip of the hand and a firm shake. The man literally just holds his hand out so when you grab it he doesn't move it, he doesn't grip it in return so it's just like you're holding his hand. How awkward is that?! Am I the only person who finds this strange or is there a whole bunch of people who really just don't know how to shake a hand? :-/

__________________________________________________________________

In more personal life news I have become a Maid of Honour!!! One of my Best friends Bernice got engaged whilst she was on holiday and she has asked me to be her Maid of Honour and I can't tell you how excited I am. It's so exciting because Bernice obviously had her transplant nearly 2 years ago and I'm just so pleased she has someone like Scott who she's just so happy with! I couldn't be more happy for them if I tried. I'm not sure how well I'm going to do being a maid of honour as it's not something I've ever really done before, saying that I've never actually been a part of a Wedding party before I've only ever been invited to weddings so I am a bit nervous to be a big thing but I think it's more exciting than anything and something I'm so pleased I got to live to see. Me and Bernice had talked about it before I got my transplant but you know at the time it was kind of a case of if I got my transplant so who knew if I was ever going to live to see my best friend get married? But I have/will do!!! I can't tell you the joy that fills me with. Bernice deserves the life she wants and I'm so pleased that she's going to marry Scott they are the loveliest couple :)

__________________________________________________________________

This week I found out from Papworth after my last blood test that I had a week after my clinic that my neutrophils (White Blood cells) haven't gone up even having taken me off of the Myfenex which is why they took me off of that in the first place, so I've had to have another blood test to see if it's gone up and if it hasn't they'll start trying to find another way to get them up. It's not anything particularly bad to get worried about at the moment but it just means I'm quite susceptible to infections etc. It's a common problem so one that I'm just leaving to Papworth to get right. I'd like them to go up very soon though as I need a filling and a route canal that I can't have done until they are at a decent level because that would just be asking for trouble if I had them done whilst I have very low level of neutrophils.

2 comments:

This is such a lovely read because it's just nice to read a snippet of your life. I miss personal blogs like this, where you just document your life. Hopefully things will start to pick up for you soon! Also, congrats on becoming maid of honour xx

Hi Stacey, I really like the new colours and layout of your blog. I don't know whether it is just me though but I find the text really hard to read on the stark background. I think this is because it is quite a slim font. I had to highlight the whole passage to comfortably read it.

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.